New Here

[KRT]

Hi everyone..I'm new here..just registered yesterday. My story...well, I'll make it short even though it's long. :shifty:
I started becoming sick about 5 years ago..Just one thing after another started happening. Heart trouble, fatique and on and on.
My primary care doctor just thought it was all in my head and tried putting me on prozac. I never went back to him.
After many test, many doctors etc. I was diagnosed with Lupus and Sjogrens. I found a great rheumatologist. A few months down the road I ended up in the hospital with severe GI problems. So, after many more test and one of which I swallowed a camera I was diagnosed with Crohns.
I also have RA and Raynauds. I've been in and out of the hospital over the past couple of years. I'm now getting Remicade Infusions.
They had been doing really good but this past time I had small flares between the infusions...I see my GI Dr. this coming Thursday.
One dr. told me that he never knew anyone with 5 auto-immune diseases..well, now he does. :stinks:

 

[Angrybird]

Hello and welcome to the forum

You certainly do have a lot to put up with! With regards to the Remi infusions how often are you having them? Depending on this perhaps your doc might decide that you have them more often or maybe at a higher dose... Is this the only med you are on? Are you on any type of vitamin supplementation?

Please keep us updated on how things go at your appt.

AB
xx

 

[KRT]

Angrybird...I get the infusions every 8 weeks..I see my GI tomorrow and I expect him to make some kind of change. I'll let you know.
I am Plaquenil and several other things like blood pressure meds, cholesterol and Tryglercide meds, Vitamin D and couple other things. At one time I was on Methatrexate but it made my hair fall out so when I started the Remicade my Rheumy took me off.

 

[David]

Hi KRT and welcome to the forum. Wow, I'm so sorry you're having to deal with so much. That's rough

I'd suggest you look into Low Dose Naltrexone. It seems to have some interesting affects for diseases from Crohn's disease to Multiple Sclerosis. I don't know if it has been used in any of your diseases besides Crohn's, but it may be looking into.

Are you on any specialized diets for the autoimmune conditions?

Other than that, have you had your vitamin B12 levels tested? If so, what were they?

All my best to you!

 

[KRT]

GI put me back on Entocort..I really didn't want it because the Remicade infurions were working fine for a while. He said if this doesn't help I'll have to come back in for another scope.
Ive never heard of Naltrexone but will def look into it..I've been on a B12 sublingual.